Special Considerations
Home care considerations
Insurance and financial considerations
Cancer in the workplace
Legal considerations
Home care considerations
Caring for a patient at home places increased technical and emotional demands
on the family.[1] Many families have numerous out-of-home responsibilities and,
in addition, family members might be physically or psychosocially compromised
and thus unable to assume the primary care role.[2] The following factors need
to be assessed when determining whether a spouse or caregiver can handle home
care: the caregiver’s age, health, motivation, and sex (women are more likely
to provide home care); the length of hospital stay (prolonged stay may
complicate transition to home care); other demands on the caregiver; the degree
of patient distress (particularly pain); the technical nature of care; and
decision-making skills required for care delivery.[3-5] Some patient groups
are at a higher risk [6] (e.g., older black women who are alone and poor and
who have multiple chronic illnesses are at risk for difficulties after they
leave the hospital). Rural patients are also at risk for home care
complications, particularly if the terminal phase of disease is prolonged and
physical debilitation increases.[5] Access to available health care may be limited. The importance of assessing the family’s
motivation and ability to provide care for the patient cannot be stressed enough.
Assessment must be broad and include the areas discussed above, and where
appropriate, must also include the level of pre-existing interpersonal
conflicts and the family’s beliefs and values with regard to home care, dying,
and the use of opioids for pain control.[7] Adequate pain and symptom
management is a key component to successful home management,[8] but this can
only be accomplished if the family and primary caregiver understand the need
for the control of pain and other symptoms.[9] (Refer to the following PDQ summaries for more information: Pain; Cardiopulmonary Syndromes; Gastrointestinal Complications; Fatigue; Nausea and Vomiting; and Fever, Sweats, and Hot Flashes.) Health care providers and
caregivers need to understand that uncontrolled symptoms, particularly poorly controlled pain, can dramatically increase the physical and psychological
burdens of caregiving.[10,11] There should be an understanding of whom to call for support or advice regarding problems that may arise. As an
illness progresses, the need for consistent personnel who know the ill person’s
situation becomes the key component of successful delivery of care in the home.[12-14] The central role of family caregivers in cancer management is increasingly recognized. Family caregivers play an essential role in promoting compliance with medical treatment, managing side effects, performing practical tasks, and providing emotional and social support.[10,11] It is also noteworthy that caregivers often function as proxies for patients in reporting symptoms and psychological distress; however, studies show that family caregivers tend to overestimate the psychosocial distress of patients, which may be a result of their own underreported burden and distress.[15-17] (Refer to the PDQ summary on Normal Adjustment and the Adjustment Disorders.)
Insurance and financial considerations
Other important issues for assessment in transitional care planning include
insurance coverage, the availability of community resources, and legal concerns. Most insurance companies cover home care, but some
policies limit services to specified settings; for example, payment may depend on the patient having already been hospitalized or needing skilled nursing services.[2] It is important to ascertain insurance limits
on specific services as well as lifetime limitations. Primary care physicians,
nurses, and social workers may need to assume the role of patient advocate when
dealing with third-party insurers, case managers, and managed care
companies.[2] For these reasons it is important to design a home care plan
that provides adequate safety to the patient, is least distressing to the
family, and utilizes resources appropriately. It is often helpful to explore
other resources that do not require insurance or patient payment, including
sectarian as well as nonsectarian family agencies, which may provide limited
unskilled services. Nursing assistants and aides (unskilled nursing services)
are usually not covered by insurance; however, hospice care may cover this
expense. Proprietary home care services provide this care but at the expense
of the patient and family.
Cancer in the workplace
Age, gender, ethnic group, and cancer type affect the working status of cancer survivors. Education of coworkers plus employment counseling for the patient are helpful in making this transition.[18]
Legal considerations
During transitions, advance directives and the need for durable power of
attorney should be discussed with the patient and the family.[19] It is
important that the patient make his or her wishes known to the physician and
the family, well in advance if possible.[20] Health care personnel need to be
cognizant of widely varying cultural approaches to these discussions. This
discussion and the resolution of these issues should be thoroughly documented.
Communication among the health care team, including patient and family, is the
key to successful transitional care planning through all settings and disease
stages. It is essential that a mechanism for communication be in place to
ensure successful collaboration. This mechanism may be verbal or written, but
a detailed written document that flows across settings is essential for
ensuring continuity of care.[2] It is most important not to leave this type of
planning until the late stages of an illness. As a patient moves through
different physical environments, it is important that this information also be
transferred to the appropriate caregivers.
References
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Cameron JI, Franche RL, Cheung AM, et al.: Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer 94 (2): 521-7, 2002.
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Maloney CH, Preston F: An overview of home care for patients with cancer. Oncol Nurs Forum 19 (1): 75-80, 1992 Jan-Feb.
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Costantini M, Camoirano E, Madeddu L, et al.: Palliative home care and place of death among cancer patients: a population-based study. Palliat Med 7 (4): 323-31, 1993.
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Allen SM: Gender differences in spousal caregiving and unmet need for care. J Gerontol 49 (4): S187-95, 1994.
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Yost LS, McCorkle R, Buhler-Wilkerson K, et al.: Determinants of subsequent home health care nursing service use by hospitalized patients with cancer. Cancer 72 (11): 3304-12, 1993.
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O'Hare PA, Malone D, Lusk E, et al.: Unmet needs of black patients with cancer posthospitalization: a descriptive study. Oncol Nurs Forum 20 (4): 659-64, 1993.
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Taylor EJ, Ferrell BR, Grant M, et al.: Managing cancer pain at home: the decisions and ethical conflicts of patients, family caregivers, and homecare nurses. Oncol Nurs Forum 20 (6): 919-27, 1993.
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Coyle N, Cherny NI, Portenoy RK: Subcutaneous opioid infusions at home. Oncology (Huntingt) 8 (4): 21-7; discussion 31-2, 37, 1994.
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Wotring RA: Cancer pain management. Home Healthc Nurse 11 (5): 40-4, 1993 Sep-Oct.
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Ferrell BR, Cohen MZ, Rhiner M, et al.: Pain as a metaphor for illness. Part II: Family caregivers' management of pain. Oncol Nurs Forum 18 (8): 1315-21, 1991 Nov-Dec.
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Ferrell BR, Rhiner M, Cohen MZ, et al.: Pain as a metaphor for illness. Part I: Impact of cancer pain on family caregivers. Oncol Nurs Forum 18 (8): 1303-9, 1991 Nov-Dec.
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McMillan SC, Small BJ: Symptom distress and quality of life in patients with cancer newly admitted to hospice home care. Oncol Nurs Forum 29 (10): 1421-8, 2002 Nov-Dec.
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Costantini M, Higginson IJ, Boni L, et al.: Effect of a palliative home care team on hospital admissions among patients with advanced cancer. Palliat Med 17 (4): 315-21, 2003.
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Lobchuk MM, Degner LF: Symptom experiences: perceptual accuracy between advanced-stage cancer patients and family caregivers in the home care setting. J Clin Oncol 20 (16): 3495-507, 2002.
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Lobchuk MM, Degner LF: Patients with cancer and next-of-kin response comparability on physical and psychological symptom well-being: trends and measurement issues. Cancer Nurs 25 (5): 358-74, 2002.
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Northouse LL, Mood D, Kershaw T, et al.: Quality of life of women with recurrent breast cancer and their family members. J Clin Oncol 20 (19): 4050-64, 2002.
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Schultz PN, Beck ML, Stava C, et al.: Cancer survivors. Work related issues. AAOHN J 50 (5): 220-6, 2002.
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Hofmann JC, Wenger NS, Davis RB, et al.: Patient preferences for communication with physicians about end-of-life decisions. SUPPORT Investigators. Study to Understand Prognoses and Preference for Outcomes and Risks of Treatment. Ann Intern Med 127 (1): 1-12, 1997.
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Grinspoon L: Update on Alzheimer's disease, part II. Harv Ment Health Lett 1 (9): 1-5, 1995.
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